Lupus Foundation of America, NC Chapter COVID-19 (Coronavirus) Update | North Carolina
Please use this page as a reference for information regarding our programming and events, as well as resources for those with lupus and how to combat COVID-19 (coronavirus)
UPDATED: July 29, 2020
The most up-to-date health information on the COVID-19 pandemic for people with lupus.
Here, you'll find:
- the most recent news on programs & events
- the steps that the Lupus Foundation of America, North Carolina Chapter is taking to educate & raise awareness people with lupus about coronavirus specific challenges they may face
- resources that will help you stay both mentally and physically healthy during this uncertain time
- actions you can take to help
The situation is still changing rapidly. As soon as we are aware of a change in recommendations we will update our information. Your local health department is the best source of risk information for your area.
At the Lupus Foundation of America, North Carolina Chapter the health and well-being of people with lupus is our highest priority. Due to the growing concern around the coronavirus disease (COVID-19), and in alignment with recent recommendations laid out by the U.S. Centers for Disease Control and Prevention (CDC) and other health experts, we have made changes to our Walk to End Lupus Now events, in-person programming, and office operations.
The remainder of 2020 programs and events will take place VIRTUALLY. Our in-person support group meetings will be suspended through the end of August 2020. Any updates to support group meetings will be announced in mid-August.
The dates for the virtual events & programs are:
- Statewide Virtual Walk to End Lupus Now: Saturday, September 12, 2020
- 20th Annual Lupus Educational Summit: Saturday, October 24, 2020
More info to come on the details on the virtual events in the coming weeks!
Please review the FAQs below for answers to all your questions about this change and how you can continue your fundraising during this critical period of time. Additionally, we've provided tips and resources below to help individuals prepare. This page will be updated as more information becomes available.
- July 13 - As states begin to move into next phases of reopening, Chair of our Medical-Scientific Advisory Council, Dr. Karen Costenbader, discusses precautions and considerations for people living with lupus.
- July 10 - Pediatric rheumatologist, Dr. Rubenstein, provides information and guidance for parents as states discuss the reopening of schools this fall.
- June 23 - In a new survey conducted by the Lupus Foundation of America, 55% of respondents taking antimalarials to manage their lupus reported having difficulty accessing their prescription for hydroxychloroquine or chloroquine during March – May 2020 of the coronavirus (COVID-19) pandemic.
- June 15 - The United States Food and Drug Administration (FDA) has revoked their Emergency Use Authorization (EUA) for chloroquine and hydroxychloroquine for the treatment and prevention of COVID-19. Read our statement.
- May 15 - The CDC has released advice for people who are at higher risk of serious illness from the coronavirus because they have compromised immune systems. Some people with lupus may have compromised immune systems because of the medications they take to control their disease. Read the CDC guidance here.
- May 12 - We've accomplished so much this spring. We put together an overview of our advocacy actions over the last couple of months.
- May 4 - Using recommendations from the CDC, we put together a list of what you can do to protect yourself when your state starts lifting restrictions
- April 27 - The CDC has updated its information on COVID-19 symptoms to include chills, shaking with chills, muscle pain, headaches, sore throat, and a loss of taste or smell. Read more about what to do if you get sick.
- April 26 - Continue to reduce stress and anxiety with 30-minute daily guided meditation sessions with Dr. Neda Gould. When: Monday, Wednesday and Friday at 12 PM and Tuesday and Thursday at 9 AM. Meeting ID: 747-490-420. Zoom link here.
- April 22 - The National Council on Aging (NCOA) has published an interview with experts including Lupus Foundation of America's president and CEO Stevan W. Gibson, which takes an objective look at the dangers of hydroxychloroquine misuse for older adults, and the shortages of medication as a byproduct of inaccurate information
March 24, 2020 - The NC Board of Pharmacy Board passes emergency rules to mitigate certain drug shortages, specifically hydroxychloroquine- a common drug used in the treatment of lupus patients. View the board's emergency rule here.
March 24, 2020 - Our new resource looks to help you cope with the stress and emotional strain of both the coronavirus itself and being isolated from loved ones. Read more.
March 24, 2020 - Three new frequently-asked questions have been added to the FAQ from our Health Educators on this page.These questions are:
- What should lupus patients do if their pharmacy runs out of HCQ/plaquenil?
- How are my disability benefits affected by coronavirus?
- How do I explain to people that lupus puts me at higher risk for serious complications from the coronavirus?
March 23, 2020 - Read the joint statement by the Lupus Foundation of America, American College of Rheumatology, American Academy of Dermatology, and the Arthritis Foundation urging the White House Coronavirus Task Force and nation's governors to ensure Hydroxychloroquine access during the COVID-19 crisis.
March 21 2020 - The Lupus Foundation of America partnered with national patient organizations to submit a letter to the Congressional Leadership and the Administration calling for the implementation of needed patient protections that include ensuring people with lupus continue to have access to hyrdroxychloroquine (HCQ). The Foundation was responsible for adding language about the needs of the lupus community to this letter. We continue to work in partnership with other patient and provider organizations to explore additional ways in which the patient community can work with government and other stakeholders to preserve access to needed care and treatments.
March 20, 2020 - Read our statement regarding access to hydroxychloroquine (Plaquenil) for people with lupus.
March 17, 2020 - The CDC has recommended that people with serious underlying health conditions stay home and avoid other people as much as possible through March 30, 2020. Lupus is a serious underlying health condition that could lead to a compromised immune system.
Please see Appendix A (on page 10) in this document from the CDC for a more detailed explanation of underlying health conditions that may increase the risk of serious illness from coronavirus.
- April 4, 2020 - New blog post: there is no evidence that taking hydroxychloroquine (Plaquenil) is effective in preventing a person from contracting the coronavirus (COVID-19). Read more.
- April 3, 2020 - We've collected a few of the updates for the past week, which you can read here: Coronavirus Prevention and Underlying Health Conditions Updates
- April 3, 2020 - Now you can find out what your state is doing to ensure people with lupus are able to access hydroxychloroquine and chloroquine while they are being investigated for use in treating COVID-19. We're tracking the actions of every state.
- April 1, 2020 - Watch the video of a conversation with Pat Wildman, Lupus Foundation of America Vice President for Advocacy & Government Relations. He gives a status report on the Foundation's actions to date to ensure a supply of these drugs for people with lupus.
- April 1, 2020 - Take action! Ask your Representative to sign onto the letter urging them to ensure access to these drugs for people with lupus and rheumatoid arthritis.It only takes 60 seconds. Send the letter now.
- April 1, 2020 Five more questions and answers have been added to our Frequently Asked Questions: Coronavirus (COVID-19) and Lupus. These questions are:
- What should I do if I cannot reach my health care provider?
- I have discoid lupus. Am I still at a higher risk for negative outcomes if I am infected with the coronavirus?
- I am anxious that I will not be able to fill my prescription for hydroxychloroquine. Should I cut back on my dosage to make my prescription last longer?
- Is it true that hydroxycloroquine will keep working 45 days after I have stopped taking it?
- Why is the coronavirus more dangerous to people with lupus?
- April 1, 2020 - New resource: Tips on what to do if you have a prescription for hydroxychloroquine or chloroquine and are experiencing difficulties getting your prescription filled.
- March 31, 2020 - FDA Recognizes Hydroxychloroquine and Chloroquine Shortages
- March 31, 2020 - We have received positive responses from federal and state officials and other key stakeholders, including the manufacturers of hydroxychloroquine and chloroquine, state boards of pharmacy, health plans, pharmacies and pharmacists, and physicians. Read more about the positive responses we've been getting.
- March 30, 2020 - The U.S. Food and Drug Administration (FDA) issued an Emergency Use Authorization (EUA) to allow hydroxychloroquine and chloroquine for coronavirus COVID-19 treatment. Read more about what this means for people with lupus.
- March 28, 2020 - Dr. Ashira Blazer, Rheumatologist at New York University's Langone Medical Center joined us for a Facebook Live video to answer all of the most recent questions. Watch the recorded video.
- March 27, 2020 - The Lupus Foundation of America in partnership with the Arthritis Foundation are urging state pharmacy boards and other important stakeholders involved with the drug supply chain to take immediate action to ensure the availability of hydroxychloroquine (Plaquenil) and chloroquine (Aralen) for people with lupus and rheumatoid arthritis. Read the letter.
- March 26, 2020 - Take action! Right now, as part of our newly-launched campaign to highlight the importance of hydroxychloroquine and chloroquine, #WithoutMyHCQ, we need you to add your voice to the fight and contact your members of Congress in support of the people with lupus who rely on these medications!
- April 20 - Analysis of initial data on lupus and COVID-19 from the Global Rheumatology Alliance is now available. Of the reported cases in the registry, 17% have lupus.
- April 15: Dr. Sam Lim, Chief of Rheumatology for Grady Health System in Atlanta, Georgia, provides an update about the COVID-19 pandemic and its impact on people with lupus.
- April 9, 2020 - Read our new resource: What to do if you have coronavirus symptoms.
- April 9, 2020 - Travis Smith, Director of Government Relations for the Lupus Foundation of America, answers questions about supply and access to hydroxchloroquine and choloroqine for people with lupus. Watch the video.
- April 8, 2020 - We've identified several new resources for those people having trouble filling their Plaquenil prescriptions. Read the details.
- April 8, 2020 - We are proud to support the Global Rheumatology Alliance’s COVID-19 Registry. This important international effort will collect de-identified information from clinicians and people with rheumatic diseases, such as lupus.Read more and access the registry here.
- April 8, 2020 - The FAQ for lupus and the coronavirus has been updated with two questions about finances, and three new health questions. These questions are:
- How might the stimulus package impact me?
- I am afraid the coronavirus may impact my ability to financially support my lupus treatment. What can I do to protect myself?
- I go into a physician’s office to get Benlysta infusions. How do I stay safe while still making sure I get my medication?
- Do NSAIDs, like Ibuprofen, make coronavirus symptoms worse?
- Should I stop taking my ACE-I or ARB medication?
- April 6: The co-chairs of the Congressional Lupus Caucus and the Congressional Arthritis Caucus, joined by 49 other Representatives, submitted a letter to the White House Coronavirus Task Force urging action to ensure people with lupus have access to the drugs they need. More than 10,000 lupus advocates asked their Representative to sign onto the letter.
Although the chance of catching the coronavirus in the U.S. is low, the threat the infection poses for people with lupus is higher than the general population. We urge you to follow these Centers for Disease Control and Prevention (CDC) recommendations to protect your health and lower your risk for infection
Yes... and NO! The 2020 Walk to End Lupus Now events have been moved to a VIRTUAL statewide Walk to End Lupus Now on Saturday, September 12th. The individual in-person walks that were scheduled to take place in Fayetteville, Charlotte, and Raleigh have been canceled.
In an abundance of caution for the health and safety of our constituents, partners, employees and the community, and in alignment with best practices laid out by the CDC, World Health Organization, and other relevant entities regarding coronavirus disease 2019 (COVID-19), we have made the decision to move events scheduled for the Fall of 2020 to virtual events. We hope you will continue to fundraise for these events and participate virtually until the in-person events this Fall.
New Walk to End Lupus Now Event Dates:
- Virtual Statewide Walk to End Lupus Now: Saturday, September 12th, 2020
More information on the virtual WTELN will be released in the coming weeks! Check the WTELN pages for more info!
New Walk to End Lupus Now Event Date:
- Virtual Statewide Walk to End Lupus Now: Saturday, September 12, 2020
While going virtual for the WTELN is a necessity to keep our thrivers safe during this time, we know that it just won't be the same as our in-person walks.
By combining our 3 walk cities into one giant virtual walk, participants can connect with hundreds of walkers throughout the state & celebrate everyone's accomplishments for the 2020 walk season.
More information on the virtual walk will be announced in the coming weeks and can be found on the WTELN pages.
If you have ALREADY registered: we highly encourage those already registered to keep their registration live. We encourage this for two reasons:
1. Your dollars for registration are donated to the good work that the organization is doing on behalf of those living with lupus and help support our programmatic offerings.
2. Keeping your registration live allows you to continue your fundraising efforts. If you cannot attend the walks due to the new dates, we strongly advise you to "virtually fundraise" even though you cannot be there in person.
If you want to register for the walk: The $10 registration fee still applies to all registrants. The $10 fee for participants over 13 years old helps support the programs and services offered to lupus thrivers throughout the state. The Walk to End Lupus Now serves as the largest fundraiser for the LFANC and is critical to providing resources.
We do offer financial assistance for those who cannot afford the $10 registration fee. For more information on that please email email@example.com
The fundraising deadline for the WTELN will be Saturday, October 10th at 11:59pm. This will allow participants to get their prizes before the 2021 walk season begins.
For any questions on fundraising, please email firstname.lastname@example.org
Yes! While the LFANC staff is working remotely, we are regularly checking the office. Any donations will be added to your walk page after we receive them.
Yes! The Lupus Summit is scheduled for Saturday, October 24th and will take place virtually. More information and details to come later in the summer.
Update: We have extended the have suspension of all in-person support group meetings through the end of July 2020.
Many support groups are meeting virtually during this time, so check with your local support group leader to see if there is a virtual meeting.
Yes. Since these are not in-person educational offerings, this series will continue as normal. Topics and dates for this programming can be found on our home page by visiting our News & Events. Make sure you use the filter to only show Events to easily find these offerings and can register.
Yes. Our patient services line (704-716-5640 ext. 1) is and will remain available for individuals to call and get resources and questions answered.